Revisiting ESS


In 2004, I was 55 years old. I was a full professor, married 34 years, my children grown and embarked on independent lives, and the grandmother of an adorable little boy with two more grandkids on the way.  I thought of myself as a healthy older woman.  My primary care doctor had diagnosed me as perimenopausal, and so I was not alarmed by irregular and sometimes heavy periods. But in the fall of that year I had a couple of very heavy bleeding episodes, and was referred to a gynecologist whom I’d seen about a year and a half ago for some unexplained uterine and pelvic discomfort.  He sent me for an ultrasound.  When I asked the tech what he saw, he said an irregular mass.  At the time, I didn’t know what a scary word “irregular” was although mass sounded bad.  I was still hoping it was fibroids.

After the ultrasound, the gynecologist said I needed surgery.  I remember saying to him in an attempt at lightheartedness, “You have to keep me alive for this little guy” and showed him a picture of my 18 month old grandson.  He didn’t promise that he would, which was also scary.

I wanted a colleague at UCI to do the surgery, but he was out of the country and wouldn’t return for two weeks.  When I emailed him could I wait until he returned, he replied, “I wouldn’t advise it.” He referred me to a community gyn-onc.


The “on the table” path report was negative for cancer, which should have been relieving but for some reason was not.  I went home and waited.


Breaking bad news is a topic you study in med school.  It’s hard to do it well. There was a fair amount of initial confusion.  Dr. Brown, my gyn-onc, knew how anxious my husband and I were; so he called us one night after he finished his surgeries.  He was the epitome of kindness, concern, and accuracy to the extent possible.  To be honest, I don’t remember too much of what he said, but I remember feeling his sincere desire to help.  What came across very memorably was his commitment to being for me no matter where things went.

At that point, ESS was divided into high grade and low grade.  I was very fortunate to be diagnosed as low grade, which had a better survival rate. Because there’d been so much initial confusion about the diagnosis, we sent the path slides for a second opinion at Stanford, whose report was actually much less thorough than our local community hospital, although the conclusion was the same. After a few weeks, I went back to work on a regimen first of provera then of femara, an aromatase inhibitor, and scans every 3 months.  I also joined an on-line information and support group, which was invaluable.  Since there was so little known, I learned a lot from my fellow patients and got tremendous emotional support.  It was also hard because women died, including the woman who had become my best friend.  But the sense that we were all sharing this very difficult path together was invaluable.  With a rare cancer, I suppose a rare disease of any kind, you can feel very much alone.

One of the “big questions” in oncology is, of course, will I survive?  Early in my treatment, I decided to ask my gyn-onc.  As I’ve said, he was a wonderful physician, kind, compassionate, caring.  But in this one instance, time pressures and the need for efficiency stifled the interaction.


This was probably such a subtle moment that the doctor had no awareness of it.  But for me, it was pivotal.

Of course, I did a lot of reading and research on this topic (there wasn’t much out there).  I contacted many other experts on uterine sarcomas and gynecologic cancers – at Cedars Sinai, Fred Hutchinson Cancer Center in Washington, Sloan-Kettering, MD Anderson.  To his credit, my gyn-onc never made me feel bad or neurotic about all of these queries.  In fact, he encouraged me to share anything I learned.  Despite all this self-initiated research, there were only two times that I advocated for a path different from what my gyn-onc recommended – one was switching from progesterone, which I hated, to the fairly new aromatase inhibitors, which I thought I would tolerate better and might be more effective; the other was stopping my chest CTs. I was still struggling with questions of mortality.  One exchange I had up at Cedars Sinai was particularly memorable.


Despite this much-needed infusion of hope, the fear of death was often overpowering.  I felt I had so much to live for – my grandkids, now expanded by two more, my husband, my kids, my work.  Yet I felt I lived from scan to scan; and a few days before a scheduled scan, I would be plagued by scananxiety.  I went into therapy, which was helpful, but death was often on my mind.


This fear was exacerbated by the possibility of recurrence.  A year after my surgery, I developed terrible pain in my right hip.  The imaging was ambiguous, and no one was certain whether it was metastasis or just arthritis. If I was going to die anyway, did I really want to go through another surgery to replace my hip? I remember going to one consult with the orthopedic surgeon to try to sort out this question. He told me rather arrogantly, “If you only have six months to live, you’d still want my hip.” He did say “my.”  He eventually did the surgery, and did a great job.  My left hip was replaced a year later; and there was some idea that the femara was responsible for this sudden degeneration of my hips, but I was never able to get a physician to confirm this.

According to an ancient Greek and Roman legend, Damocles was a fawning courtier who kept telling King Dionysus how wonderful his life was.  Finally, exasperated at Damocles’ rose-colored way of viewing the nerve-wracking pressures of being a king, the king invited him to switch places for a day. Damocles eagerly agreed.  But at a feast that evening, the king arranged for a sword to be suspended over Damocles head, suspended by only a single thread to signify the omnipresent dangers the king faced every day. In the legend, Damocles learns a lesson about not making assumptions about apparently picture-perfect lives.  In my poem, I imagined what would happen had that single strand anchoring the sword broken.


In addition to the hip replacements, I did have a couple of other scares about recurrence.  In 2010, about 5 ½ years after my original surgery, an evaluative MRI of my spine to assess my spinal stenosis and degenerative disc disease showed something that my gyn onc was afraid could be a metastasis.  I was referred to a radiologist.


I’ve often heard from patients at FHC how carefully they prepare for their medical visits, and I was exactly the same.  I wanted to “matter” to this strange doctor, to make him care about me.  In a strange way, it did feel like getting ready for a date.

On the day that I underwent my spinal biopsy, my mother died.  She was 90 years old, and had been ill for the last 6 months.  I’d flown to visit her about 10 days previously in Northern California, and hospice had told us she was likely to die very soon.  In my family, this is how the story goes: My mom hung on so she could bargain with God to trade her life for mine.  We imagine my future being stuffed back into my body, while her soul ascended to heaven.  Of course I know that is not what happened, but that is the story we tell. My biopsy was negative.

And that is a good note, I think, on which to end this story.  I will be happy to answer any questions you have.